When we went to Spokane....

We stayed in this hotel! 

All expenses paid,

 pretty great hotel and great location in downtown Spokane.

We were on the 8th floor. With a great view of the Spokane River.

What did I tell you? Great view! 

The only downside to staying on the 8th floor,

 was if you rode up in the middle elevator, 

it was a little nauseating. 

Our hotel was wedged right between the convention center,

 and performing arts center.

And a block away from Riverside Park.

I love Riverside Park!

This is a slide! And a happy part of my childhood memories.

(I managed to use the branches to hide people, this was never sans people)

And the garbage goat! 

Push the button on the wall and hold garbage under it's mouth,

 and the goat "eats" it. 

Joseph was at "boot camp" and I went exploring. 

Or swimming, or reading...

I was at Riverside Park.

While taking these pictures I had an adventure.

I was taking pictures of little waterfalls,

 and I saw this homeless looking old man,

 and he was fishing off of the Spokane power tower.

It cracked me up. His line was soooo far down! 

So I snapped a picture. 

A few minutes later, that man yelled at me.

I was still on the bridge but pretty far away.

Also I was near a Grandpa with his grandsons,

who stepped defensively in front of me when the homeless man yelled at me.

I turned to look at him

and saw this...

He had caught a fish, and so I took another picture,

 and gave him a thumbs up.  

And continued on my way.

It was a funny adventure!

I laughed pretty hard. 

Joseph had a good time at bootcamp.

It was comprised of 14 people, and 5 vocational counselors from DSB.

4 people there were completely blind,  

the rest were varied levels of legally blind,

all semi-employed or un-employed.

I sat in on the last day and it was wonderful.

Joseph has been given new insight and tools to keep up his job search,

network, and how to sell himself to an employer better. 

He has been busy, with his "homework" since returning home. 

It was a mini-vacation, 

(when we were together)

We had fun, 

ordered room service 3 times

ate at a crazy expensive, dress for dinner- type restaurant (in the hotel)

still all paid for, we did really well sticking to the food vouchers 

and the last night we ate in the bar at the restaurant,

you don't have to "dress" for dinner, and it was half off.

We learned that drunk people are really loud, and really really friendly.

At least the people at the hotel were.

Overall it was an awesome experience for Joseph,

 and a welcome break from our live's stresses,

it should have been longer!

much longer.

Boot Camp?

Yes, that's right.  Joseph will be attending a boot camp of seminars for the blind and visually impaired it's "an intensive 3 day workshop that will focus on many of the elements that make a job search successful.  It is designed to assist you in restarting, re-energizing, re-tooling your job search efforts." We signed Joseph on to do this in June and we were hoping that we would have to cancel because he would have a job but no he doesn't. 


We are being put up in the double tree hotel in downtown spokane, right near Riverfront Park. And our gas is being re-imbursed! Which is awesome because we have to borrow my parents Honda Pilot, it's the only car with AC, and we have to travel in the middle of the day. (We can usually plan our travels to miss the heat, but this is an exception, we didn't plan it, or our arrival time) So we will be spending more than usual on gas, but it's alright it still comes out to free. Joseph will have meal vouchers, for breakfast and dinner while we are there. We're frugal so we can probably make it work for the both of us. I will have to find my own lunches though because that meal is served at bootcamp  each day and I don't get to attend.


My plans involve walking around riverfront park, maybe a little of riverside drive, picture taking at both places, both are in walking distance from the hotel. Maybe check out the botanical gardens, lots of swimming in the outdoor pool, a little laying out in the sun. some movie watching in our room,  book reading, maybe a little shopping, we want to make a visit to see the Toths... but basically Joseph will be busy, I will be trying to keep busy and we'll still have time enough together to make this feel like an almost all-expenses paid vacation. 


We're really excited to go. See you later. 
Although I may update from there, we will have wifi.
Until then here are some flower pictures.

(This is the background on my iPod right now.)

A letter from Dr. Smith to Dr. Cooke

Dr. Smith (new ophthalmologist) Dr. Cooke (neurologist) 

(with explanations by Shaylee in italics)

Dear Dr. Cooke:

Joseph returned for a follow up. As you know he is a 28 year old young man with markedly decreased vision secondary to previous episodes of optic neuritis related to his Multiple Sclerosis. Optic neuritis is swelling in the optic nerve. It can also be one of the first symptoms of Multiple Sclerosis.

On examination his best corrected vision is 20/300 OD and count finger at three feet OS. The exam is pertinent for rotary nystagmus in all positions of gaze. Nystagmus - involuntary eye movements from side to side, up & down or rotary. Joseph's nystagmus would be considered "acquired nystagmus" because it developed later in life and as a result of his Multiple Sclerosis. His visual field to confrontation show dense loss of his central field. Joseph has extreme blurriness in his central field of vision exclusively, while his peripheral vision remains less blurred. The optic nerve show severe bilateral optic nerve pallor. Pallor also means atrophy meaning the loss of some or most of the fibers of the optic nerve, or damage. The optic nerve is part of the brain and has no capability for regeneration. Hence, the term may refer to serious or mild but always irreversible visual loss due to damage to the optic nerve. Bilateral optic atrophy: Loss of vision in both eyes. Joseph would have the "acquired" type of optic atrophy, secondary to swelling within the optic nerve (optic neuritis). Optic neuritis a result of a Multiple Sclerosis exacerbation or "flare up". We will see him again in one year.

Sincerely,

Dr. Quinn Smith

Courtesy for the Blind

Totally just FYI.

There are many different websites with Courtesy/Etiquette for the blind

and I liked this one the most...

And no worries if you mess up,

I (Shaylee) have,

there is a large learning curve for vision loss for all involved.

(I made a couple additions, they are in blue)

1. I'm an ordinary person, just blind. You don't need to raise your voice or address me as if I were a child. Don't ask my spouse what I want—"Cream in the coffee?"—ask me.
2. I may use a long white cane or a guide dog to walk independently; or I may ask to take your arm. Let me decide, and please don't grab my arm; let me take yours. I'll keep a half-step behind to anticipate curbs and steps. It is also okay to tell me of upcoming hazards that I may not be aware of.
3. I want to know who's in the room with me. Speak when you enter. Introduce me to the others. Include children, and tell me if there's a cat or dog. And please let me know when you leave.
4. The door to a room or cabinet or to a car left partially open is a hazard to me. As well as other things that I could trip on such as shoes, bags, clothes etc.
5. At dinner I will not have trouble with ordinary table skills. But it is not impolite to make me aware of what utensils,condiments or food is in front of me.
6. Don't avoid words like "see." I use them, too. I'm always glad to see you.
7. I don't want pity. But don't talk about the "wonderful compensations" of blindness. My sense of smell, touch, or hearing did not improve when I became blind. I rely on them more and, therefore, may get more information through those senses than you do—that's all.
8. If I'm your houseguest, show me the bathroom, closet, dresser, window—the light switch, too. I like to know whether the lights are on.
9. I'll discuss blindness with you if you're curious, but it's an old story to me. I have as many other interests as you do.
10. Don't think of me as just a blind person. I'm just a person who happens to be blind.

I have messed up. I left the room with out telling Joseph and he couldn't find me. I have also entered a room without announcing my presence and scared him. I forget, it takes time to learn. And we are learning more everyday.

His Eyes

The question we get most often... so what can Joseph see?

It's hard to believe that there these beautiful baby blues

Don't see much.

These are part of his field of vision test:

(Left and Right Respectively)

The black parts are where he cannot see, it's not black or white,

he says it's just blurred beyond comprehension.

Besides the blurred spots, his eyes are constantly shaking.

This is called Nystagmus (click for more info)

Definition of Blindness from the National Federation for the Blind (NFB)

The federal statute defines blindness as follows:

[T]he term "blindness" means central visual acuity of 20/200 or less in the better eye with the use of a correcting lens. An eye which is accompanied by a limitation in the fields of vision such that the widest diameter of the visual field subtends an angle no greater than 20 degrees shall be considered for purposes in this paragraph as having a central visual acuity of 20/200 or less.

In a letter from his Ophthalmologist Dr Deitz :

"[Joseph] has bilateral optic atrophy,

resulting in the best corrected vision of 20/400 in either eye."

Most of the time when asked, I say he is blind,

only when pressed further I will elaborate

on what he can and cannot see.

I hope this answers the question.

B-u-s-y

On March 16th

We went to Spokane.

Appointments (P.T. and Neurology) went well,

Joe is doing well.

Lost a little muscle tone- understandably so, he's not working.

But small improvements overall.

He does NOT need a support cane or stick,

using the white cane should be enough,

but he may need to learn to use it completely without sight.

Saw Sharon - Technology Counselor (DSB)

She's awesome. She's hilarious.

We learned a lot about how to make the computer accessible for Joseph again.

and programs and electronics that can be purchased for him.

He now has a talking watch, large number alarm clock,

talking calculator, and a digital voice recorder.

We will be starting Braille this week.

Another post coming soon.

*s

White Canes (clarification)

This is a "white cane", Joseph's is a little different though. I realized the term white cane can be confusing, so I will clarify. It is all white or white and red. Joseph has a white and red cane, it's called a cane but it more of a long stick, with a roller on the end, so it can be swung back and forth in front of the person using it. There are also support canes made all to look like white canes too. So when you see someone walking with a white or white & red cane (or stick if you will), it means they are legally blind- to fully blind. The cane swings out in front of them just a couple inches wider than shoulder width, so far people have understood when they've seen us around and moved out of the way when Joseph is out and about, using his white cane, which I appreciate.

** News flash** Joseph went walking today without Albert (trek pole) and just the white cane and he walked great!! Good balance, and walked really straight!! We will keep practicing.

Yet another update on Joseph

Sorry for the month-long absence, we've had a lot going on and very little time to write about it. In fact this should be the 1st of many updates.

Doctor

Joseph will see his neurologist on Tues (the 16th). He will have a physical therapy session first. During which they'll determine what kind of stick or cane will work well for him and get him started using a white cane. (and the normal physical therapy stuff).

White Cane

Why is Joseph goin to use a white cane? A white cane identifies his as legally blind, so it will or should make others aware that he can't see them. The cane will also help him find bumps, steps curbs etc, that he can't see, before he gets to them. He will learn his white cane skills without vision (using sleep shades and resisting the urge to look down) When he is good with a white cane he will be eligible for a guide dog.

OTC

The Department of Service for the Blind (DSB) has an Orientation Training Center (OTC) for those with vision loss ranging from visually impaired to totally blind. The OTC is in Seattle, we went there on Tues the 2nd. We had a guided tour of the facility and the apartments. We had a packet of info about the OTC before we came for the tour, but we had yet to make a decision about Joseph attending there. They have terms that are 5 weeks long with 1 to 2 week breaks, he would have to live in Seattle during term.

The OTC offers many classes: home EC, shop, computers, keyboarding, zoom text, jaws, orientation & mobility. braille etc, we saw all of the classrooms and met most of the teachers, who talked to us about their particular subject. It was a great facility and the tour was awesome. I was a silent follower for most part, and I left the decision about attending up to Joseph. He said that his mind says its wonderful, but it doesn't feel right. So he won't be attending there. He has opted to do the training at home.

** update (since I originally wrote this)**

Joseph's mobility counselor came over yesterday and he now has a white cane and has started training with it. We should be receiving our braille books here soon and possibly participating in a class via telephone through the OTC. And that is an exciting/scary thing because braille is supposed to be pretty darn hard to learn. - side note Steffi, (mobility counselor) has said that she was very impressed with Joe's ability to learn A,B &C in braille one day when he was introduced to it. She was equally impressed with his rhythm with a white cane, he won't struggle as much as some she has worked with... I may be an entirely different case!

P.S. His white cane is named Ernie, rightly so since his trekking pole is Albert...

Modifications

had to be made to our daily life and routines. Joseph's eyesight (or lack of) is permanent we are learning ways to make life easier and more normal for him.
These are some of the modifications we've had to make...
(lots of pics, it would be hard to explain without them)

Meet Albert, Joseph's walking companion.
He is a trek pole,
our favorite REI guy hooked us up at the REI bi-annual garage sale. He knew we were coming and what we were after he held onto these (I say these because it was a set of 2, 1 broken, 1 good) and brought them to us while we were in line with our other finds.

Albert has a great handle with an adjustable strap.

We modified the tip by adding a rubber cap.
In Home modifications:
This is the dryer, we used craft foam with a sticky back used a hole punch to make the lovely dots. The dots are color coded and tactile. Joseph just has to line up the dots (using sight and or touch).

This is the washer, he has to line up the dots to turn the washer on the normal cycle.
Steffi (Mobility Counselor) made a house call and she checked this out, I got a high 5!

Joseph's Enlarger (or CCT TV whatever that means)
It has a camera under the TV part and you can make adjustments, like zoom, focus, invert color, color changes, reading lines or blocks.


This is normal color

Inverted

And color change, there are many colors, some easier on the eyes than others!

So, that is your little peak.

*js*

DSB

DSB (Department of Services for the Blind.) =Amazing!
They are government so that means slow.
But they are good.
The people are great.
Steffi (mobility counselor) came to the house today,
and gave Joseph some stuff,
and we picked out some other stuff to come.
It's all free.
Stuff includes: a talking watch, a large display alarm clock, a talking calculator, a talking voice recorder, large kitchen timer, big number address book..
it's amazing how much stuff they have for the visually impaired.


We are thankful.
*js*